Audrey is done with cycle 5! Each day is one step closer to being done with chemotherapy. Cycle 5 was 3 days long and with our visit Wednesday to check labs and visit the doc, we were at Children's almost everyday last week. Thursday was the long day where we sat in the infusion area while Audrey received the 2 chemo drugs. She really did such a good job considering it was so long. We checked in at 8:30 and didn't leave until 4:30. The infusion rooms leave a LOT to be desired. They aren't private, quiet, or spacious. The nurses do their best with what they have, and fortunately we were lucky enough to have Kristen again, who is a fantastic nurse. The two meds Audrey got don't make her nearly as sick as the med she got last cycle. She still gets her nausea med twice a day but she has been eating pretty well and has only been a little bit cranky. I have included a picture of Audrey riding on the "lily pad" as we were trying to entertain her the last two hours of our day Thursday. One of the nutritionists stopped by to check in towards the end of our day. Audrey's growth has been strong and steady, thank God. She provided us with a couple more tools to keep Audrey's weight gain up. It is definitely a challenge when you consider how few days she actually feels good. Then add the typical toddler behavior towards food and their tendency to get distracted. We have our work cut out for us for sure.

Friday and Saturday were quick days as she only received one med and it is given over an hour. Sunday we returned to get the injection again which helps her bounce back quicker. It definitely worked last time as Audrey's levels were ready for us to start the cycle on time instead of having to delay again. This week we have clinic Wednesday and then Thursday we will be touching base with her cardiologist and repeating her echo. Her 6th cycle is scheduled for the day after Christmas. Though the timing isn't ideal, the sooner we get them done the sooner we can be done and get her darn line out! I will be going back to work after her 6th cycle and Galen will be starting his leave. The fact that we have been able to be with her through this and haven't had to worry about $$ is huge. We have been able to focus the majority of our attention on Audrey and getting her healthy again. Truly, we can never tell you how much this has meant to us. So many families are faced with longer treatments and are forced to return to work while their child is still incredibly sick. We do not take for granted the gifts we have been given.

 Hopefully we won't have much for news after this weeks appointment. Pray for a beautiful echo for Audrey. 

Love,
Shannon & Galen

Drinking the contrast

Running around before clinic

Well, I didn't post last week as it was fairly uneventful. We saw her doctors at clinic Wednesday and all of her levels were fine. Poor thing was so sick after the 4th cycle. One of the 4 chemo meds she is getting makes her especially nauseated (though they all do somewhat). Typically she only needs her anti-nausea med for 5 or so days after chemo but this time we continued it through day 11 so that she could keep food down. Finally the last couple of days she has felt better so we have been able to skip the med and get a little more in her tummy.

This week we anticipated being pretty exhausted as we had visits Monday, Tuesday and today. Monday we went in to check her hearing as well as to have an EKG and echocardiogram to monitor her heart. Her hearing tests were fine. She is such a trooper for how young she is. From what I can gather it is somewhat common for children who receive Carboplatin (one of the chemo meds) to end up with some hearing loss. Just another side effect that we must pray doesn't occur in Audrey. We went straight from the audiology department to cardiology and fortunately they were able to squeeze our appointments in closer together. This made for a much smoother day than we expected! Half of the difficulty with appointments is trying to entertain Audrey while we wait and keeping her from putting her hands all over every germy surface! We ended up sneaking in a dressing change as well after her echo which was quick and easy as well. All in all we were feeling pretty good leaving Monday afternoon.

Tuesday I guess we had to pay for the good luck we had Monday. We were told to check in at 9am for a long day in radiology even though our appointment wasn't until 10:15. We of course arrived on time but didn't get called back until 10:15! We were a little frustrated, to say the least, since Audrey had to keep from eating for the tests/anesthesia. When we did finally get back to start our appointment we had to get Audrey to drink the oral contrast for the CT scan. They say it doesn't taste like anything but they could only mix it with water. My fear was that we wouldn't get Audrey to drink enough of it and they would have to use an NG tube to get the rest in her. Fortunately we were able to play enough games and switch cups a couple of times to keep things interesting! Galen and I were feeling pretty happy to accomplish this feat and were quickly frustrated again as a comment was made about how long it took to get the contrast in her. HELLO! We would have had it in her an hour earlier if we had been called back sooner! Anyway, we then had to wait around for 40 minutes before the injected contrast was given for the PET scan. Then once she had this injected we had to wait another 50 minutes before she started anesthesia for the tests. She did great but poor baby was much crankier coming out of anesthesia than she has been before. It took her a little while to get in a better mood and then we were out the door. Literally 2 minutes after leaving the hospital one of the oncology docs called us (well we made sure to page him before we left the hospital to remind him to call us as soon as he saw the results!) He briefly explained that the mass in her neck was no longer visible and the tumor in her abdomen shrunk from 21cm to 13cm! Hallelujah!

Today we went in for a regular clinic visit and to check labs. Everything looked good except her platelets are running a little low. We will be back Saturday to make sure she doesn't dip so low that she needs to be given a transfusion. We were eager to see her docs today so that we could get better details on what the scans showed. Lets just say our visit was a bit underwhelming. We were meeting with the nurse practitioner on our team and she couldn't explain to us the difference between what the PET scan shows and what the CT scan shows. She also pulled up the echo results and pointed out that Audrey's left ventricular function measured in the low normal. She suggested we try to speak to one of the docs (fellow) so that he could better explain. So the doc comes in and I can't say he did a great job explaining it either but basically, the PET scan did not show any concerning areas. Her initial scan at diagnosis lit up her abdominal tumor and the lymph node area under her collar bone. Now it is showing nothing! The CT scan shows the tumor has reduced in size and doesn't show anything concerning in her lymph nodes. The reason the tumor doesn't light up on the PET scan is because it isn't active. This is GREAT NEWS! This is such a relief to know that the awful meds they have been giving our baby girl are working and, Lord willing, they will get rid of her cancer for good! The doc then explained that Audrey's echo results are all still in normal range but showed a slight variation from her last echo. He assured us it isn't something that is concerning at this point. We made sure they still put in a call to her cardiologist to make sure we could hear it from her as well. She will be seeing them next month to repeat the echo and have a visit.

We can't believe we are already due for the 5th cycle next week. It will be three days long but shouldn't make her quite as sick as this previous cycle. It is just nice knowing that each cycle is one step closer to being done with chemo. Based on the timing of her chemo we should have a healthy and happy Christmas before she starts the 6th cycle.

Thank you for thoughts and prayers for our family and Happy Thanksgiving! Can you guess what we are thankful for this year?

Shannon & Galen

Burning time before our appointment. I love running these halls!

Last day of cycle 4. That means almost halfway!

I apologize for taking so long to write a good update on Audrey's progress. We just left the hospital today for what was a short second day to her 4th cycle of chemotherapy. Last week we had clinic and were planning to start the 4th cycle last Thursday, but Audrey's levels had once again barely missed the cutoff so we were pushed out until this week. Last week we did find out that Audrey will be receiving 8 total cycles instead of only 4. While I wanted to post this last week, we were meeting with Dr Park, the neuorblastoma specialist, Monday and I figured she would give us more useful information.

While we have been busy focusing on what her scans will show, we forgot that we were still waiting for a test to come back on the cancer's genetic makeup. This finally came back and showed that Audrey's cancer has "deletion of p1"- which in layman's terms means it has a slightly higher chance of recurrence. Dr Park assures us it is still only 10-15% chance of recurrence. Audrey still falls in the intermediate risk category and still has many things in her favor; Namely her young age, overall health and demeanor,  and the fact that it did not spread to her bone marrow or blood. She said Audrey's prognosis is still "excellent." Surgery still depends upon the size of her tumor once we repeat the scans at the end of the month. We will have a long few days the 25-27th but will fortunately be home for Thanksgiving. (Having to push out cycle 4 turned out to be a blessing after all!) 

Because Audrey doesn't bounce back as quickly as they would like, she now has to get an injection after each chemo cycle to help her bone marrow recover and get her counts back up sooner. It means another trip to the hospital but it is nice that she will spend less time in the high-risk-of-infection-zone. 

This 4th cycle is OK so far. Yesterday was our longer day of about 4 1/2 hours. Poor thing got sick last night as I believe we should have given her nausea med sooner but she has been good otherwise. Today was quick and we had the same nurse as yesterday, who we really like. Tomorrow will be quick too as well as Saturday. 

Last week we ran into the little girl we mentioned before is also undergoing treatment for Neuroblastoma and it sounds like they will be done at 4 cycles. We are very happy for their family and can't wait to be at the end of Audrey's treatment. We are still very much hopeful for a miracle when they repeat scans on Audrey in two weeks. We know we are lucky to have avoided any inpatient time during her treatment so far (apart from her initial inpatient stay) and we hope to keep it this way. Since the meds have a cumulative effect and we are well into cold/flu season, we will continue to be hermits over the next couple months to keep our girl as safe as possible. 

Thanks for continuing to pray and think of us! We will update again soon! 

Love

Shannon and Galen 

Weekly Dressing Change

Can't believe it is almost two months since Audrey's diagnosis. Time has went by so quickly. This week we had several appointments and we were able to get more information on what the next couple of months will look like.

Monday we saw Audrey's pediatrician. She was very impressed with Audrey's growth over the past month or so-- our baby is almost 20 pounds! Must be all the butter and cheese we add to everything ;) We discussed Audrey's development and side effects thus far. It was a pretty quick appointment.

Tuesday I got a call from the surgical coordinator to schedule a visit with the surgeon who completed Audrey's first surgery and who is to complete any subsequent surgeries. I told the coordinator that I didn't think the dates were right as they had her surgery scheduled for 10 days after her 4th cycle. Since he couldn't really speak to it (just going off of what he is told) I just let him schedule our consults and thought maybe we really would be preparing for a Nov 15th surgery.

Wednesday were labs and clinic as well as the visit with the surgeon. Audrey's levels had already dipped pretty low whereas before it was taking more like two weeks post-chemo for her levels to drop. Nothing too alarming and no need for transfusions but she is on fever watch again. In her clinic visit I mentioned the surgery date and it seems the communication between oncology and the surgical center was a bit off. Weeks ago the November date was put up as a tentative surgery date and this hadn't been changed. The docs promised immediate follow up with surgery but we still went to meet with the surgeon anyway. Dr Ledbetter (the surgeon) is pretty great. He explained that Audrey's treatment is still somewhat up in the air until we get some sort of progress on what the chemo has done to her tumor. He said at this point we still can't say what Audrey's surgery will look like, if she will need more than one, or if she will need it at all. He walked us through her CT images from when she was first diagnosed (not sure why this wasn't done before) and showed us the affected areas. He also explained what surgery would look like if he had to operate on the tumor as it presented on her initial scans. (Absolutely terrifying!) Because Audrey's tumor is located in a very tricky spot, surgery would be extremely invasive and would leave her with an enormous scar. If this is what we must do, we at least know she would be in very good hands.

Thursday we had another echocardiogram and a visit with Audrey's cardiologist. Her heart still looks beautiful and there will be no changes to her heart meds as of right now. If it weren't for Audrey's cancer we would have been the point where we would only have to see the cardiologist every 6 months but not with everything going on now. We will continue to see them often for the next several months. The one chemo med that they are most worried could damage her heart will be given again for cycle 4, so we will be repeating the echo in a few weeks.

This morning we returned to check Audrey's labs to make sure she didn't need any transfusions. While there we were able to talk to one of her doctors about the next steps. She explained that after the surgery scheduling confusion they discussed with Dr Park (Neuroblastoma specialist) and it should go as follows: After cycle 4 they will repeat Audrey's scans. If her tumor has been reduced by 50% or more she should not need surgery or the additional 4 cycles. If it has not been reduced by 50% they will proceed with the additional cycles of chemo. Then they would repeat scans after cycle 8 and determine then if she needs surgery. This is much better than we had even hoped. It will be an absolute miracle if Audrey can get by with just the four cycles, but at the least we want to avoid surgery. We should know over the next couple of weeks when her scans will be- please pray that the tumor is gone when they scan again.

We will continue to update over the next couple of weeks. So far next week is looking like it will be a quiet one but we will be going in Wednesday for clinic. I also requested that we finally meet Dr Park so that should happen the week after cycle 4.

Thanks for continuing to follow Audrey's fight!

Well we are now three cycles down in Audrey's treatment. Though we don't want to push out her treatment it was awfully nice to have a weekend off where we pretty much knew her levels were back up and we could get out of the house for a bit.

Friday we took her to the zoo- which if anyone remembers it was totally rainy but that was perfect for us! We bundled up and luckily not many people thought the zoo was a good idea. It was nice and quiet and many of the animals were up close to the glass since they didn't want to be in the rain. It stopped raining not long after we got there and Audrey had such a good time. Sunday we took Audrey to the pumpkin patch for the first time. It was perfect weather and a nice big farm area so we didn't have to worry about being in close contact with everyone. It was such a good "normal" weekend where we could forget about her condition for a little while and just enjoy what we have.

Monday was a short visit. They confirmed her levels were high enough to start the third cycle and we were scheduled to come in bright and early Tuesday morning.

Though our longest day, Tuesday was pretty smooth. We had the best nurse ever- she was sweet as can be and loved playing with Audrey. She also suggested we meet another family whose beautiful little girl is also undergoing Chemotherapy for Neuroblastoma. It was really nice to be able to relate to someone else for a minute but our heart aches for them. Their situation is slightly different but also very similar. Audrey and their baby girl were diagnosed within a day of each other and were inpatient at the same time. They were both in to start their third cycle Tuesday and we were able to chat for a little while before poor Audrey got irritable and then sick :( It was at the very end of the long day and she probably needed her nausea med sooner. She was pretty sleepy the rest of the day.

Wednesday and Thursday were short days. It only took about two hours from checking in to leaving. Crazy how fast two hours goes by when you have just been in for over 8 the day prior. So now we are back at the waiting for her levels to dip phase. She will go in next Wednesday to check in and Thursday she will see her cardiologists. We also see her pediatrician next week for the first time since she sent us to the ER in August. We hope and pray that we can have another smooth couple of weeks and we can take on cycle 4 without any complications.

Today Galen sent me a picture of an adorable gift basket for Audrey that was dropped off at his store, in addition to $$ from fundraising that was setup through work. We are basically speechless at this point. We seriously work with the GREATEST people. I don't know how we will ever truly show our gratitude for the generosity that we have seen throughout the last couple of months but we will certainly try!

We will update next week but hopefully it will be a boring one ;)

Well we were supposed to be starting Audrey's third cycle of chemotherapy today but her system hasn't fully rebounded from cycle two. We visited her doctors last Wednesday and her platelet count was getting low. This meant we had to return Friday and Sunday to check again and make sure she didn't need a platelet transfusion. Low platelets mean Audrey is at risk for bleeding and bruises really easily. Poor thing bruised her head just from bumping it with her empty bottle. We went back in yesterday to see her doctors again and everything had bounced back expect for her ANC- which means no chemo yet. Fortunately we have been able to avoid transfusions since our first one for her anemia and we haven't had to be admitted for any fevers thus far. The more time we can be at home throughout this process, the better. We will be going back Monday to double check her ANC and hopefully start cycle 3 on Tuesday.

Audrey has been cruising along without much for immediate side effects (nausea and hair loss thus far) but it's really the long term effects that scare us the most. She has continued to gain weight- finally up over 19 pounds! We continue to get praise over what a good and patient baby she is at each visit. I guess they expect her to be putting up more of a fight or screaming at being messed with- but she saves that for home ;)

We were able to celebrate Audrey's first birthday over the weekend. We only had a couple of family members over due to her neutropenia but she had a lot of fun. Audrey got many new toys, a couple of which she stands to play with and we have noticed her walking has improved just over the last several days. We continue to be amazed at Audrey's strength.

We are looking forward to getting through the next couple of cycles so that we can get new scans and hopefully a miraculous report. We will be visiting Audrey's cardiologists week after next as we were scheduled to check in with them before all the recent developments. We pray her heart continues to stay strong against the harsh medications of treatment. Once we get through early next week we will update again. Please think of Audrey as she goes through her third cycle.

We really can't express our gratitude for all of the support for our family. We are so looking forward to the day that Audrey is cancer free and we can help others in similar situations.

Another fairly uneventful week thank goodness. We had a visit Wednesday with an echocardiogram, line dressing change, labs and clinic visit with her doctors. After our most recent cycle Audrey seemed to be nauseated for several days afterwards. We kept her on her anti nausea and fortunately by day 5 she seemed to have regained her appetite quite dramatically. We haven't seen any other visible side effects other than the nausea and possibly a stronger preference in what she eats.
She is still hanging on to a little bit of her hair and we are just going to let it go and look forward to it coming back once she's done. We have tried to get a few more hats as it is getting colder and she is nearly bald but I don't think she lets a hat stay on for longer than 20 seconds. We will just keep trying!

Her echo was probably the toughest we have had so far. We weren't big fans of the tech who performed it. She didn't have a very calm demeanor and I think Audrey picked up on that. Also, Audrey's line is placed right over her heart so it makes getting the images slightly challenging and covers her dressing in the gel. Not fun. We heard back on the same day it was performed and all of the measurements were the same as her previous echo- so it looks like the meds have not affected her heart thus far. Thank The Lord.

She gained weight again! Woo hoo! Not much of a gain but a wins a win! We are continuing to keep focused on what she is eating and trying our best to accommodate what she wants while also getting her to eat what's going to give her the most calories/fat. I am thankful that Audrey is still drinking breast milk. So many stop breast feeing earlier but I am confident that it is incredibly beneficial that she is getting it considering her health.

Our visit with her docs was quick. We just touched base on her levels and what we had been dealing with since cycle 2 was given.

Saturday we went back just for a lab draw to check on all of her levels since we won't see them again until Wednesday. Everything looks good- meaning she doesn't need any transfusions- but she is neutropenic. This means her ability to fight off infection is extremely compromised and at the same time she is more likely to run a fever. So we are keeping a close eye on her temp while her body bounces back up.

I do have to say that we had a less than ideal interaction with our nurse Saturday. She started off asking us why we were in for labs- what we were looking for. Apparently she was helping the person who was supposed to be our nurse (whom we never actually saw). So the whole time she seemed a little inconvenienced and annoyed. At one point my mom asked about why Audrey got a double-line instead of a single. I explained that double lines help if two meds need to be administered simultaneously and also two allows one to be used for draws and the other to give meds. The nurse then says "well we give these lines to babies who are going to be really sick and who will be inpatient a lot." Gee, how sweet. We also mentioned her birthday coming next week to which she asked if we had "big plans." Hmmm, her immune system is incredibly compromised- what do you think? She then told us "well hopefully you aren't inpatient for it." Uh, yeah. Thanks. Our nurses are typically amazing but I have to say, I think she could use a lesson in bedside manner.

So next week we go in again for labs and clinic. Hopefully Audrey's system is recovering as we speak and she can enjoy her birthday week with just the one visit to Children's. I am back to work for a few days before I can start my new leave (very complicated but I have I wait until Audrey's bday so that we have hit when I started leave last year). So she has had some much-needed daddy time instead.

We will continue to update after next week. We know we haven't hit the worst of this process but are taking it day by day and we are so grateful it has been so smooth thus far. Thanks for following our journey.

Well we didn't end up needing a platelet transfusion last week. We also didn't have to visit the ER due to any fevers so it has been a fairly calm week. We did start to notice that Audrey was shedding more hair than usual and that has only gotten worse the last several days. She thinks she is funny when she reaches up and pulls out a little chunk (usually while eating so it's a nice avocado covered handful of hair). It is really the first physical sign of the chemo meds and makes it all the more apparent what they are doing to her body. Fortunately at this age plenty of babies have no hair and she is sure cute enough to pull off bald! We are just hoping her trademark lashes don't go too!

Wednesday we had labs and a visit with the doctors. Her counts were back up which means she was ready for Cycle 2. She also gained weight (.2 oz but we will take it!) Her appetite hasn't changed much so far and we have a nausea medication that we can use for her as needed. We were able to get a few questions answered with the docs as we have had a little more time to settle in and think about everything. We have yet to meet the Doctor who is really the expert on neuroblastoma- but are confident she is contributing to Audrey's care plan and we hope to meet her soon!

Thursday we went in bright and early for our Chemo Cycle 2. This included 1 repeat med and 2 new ones. Like I mentioned before these new ones are a little scarier and there were additional meds she got throughout the day based on side effects of these. We had to be in the infusion center until 5:15 or so which made for a long day. Fortunately she was still able to get a couple of naps in and we brought plenty of toys for distraction. We hope all of our cycles go this smooth and pray we can continue to be outpatient for the remainder of her treatment.

Next week we go in to visit her docs again (check labs and growth as well) and we will be doing another echo on her heart. One of the new meds has been known to damage the heart muscle and due to Audrey's prior heart condition, this could be more likely for her. Pray her heart is safe and protected against this.

Cycle 3 is already scheduled for the 10th as long as her system has rebounded by then. This will be a three day cycle again like Cycle 1.

Fortunately our happy girl's attitude hasn't changed. She has been playful as ever and has started taking her first couple of steps unassisted. Her first birthday is less than 2 weeks away and though we wish the circumstances were different, we are so excited to celebrate our strong girl.

As always, thank you so much for your prayers and kind words. Thank you for your continued support as we keep moving along this unfamiliar road.

We can't believe it has already been two and a half weeks since Audrey's initial diagnosis. This week we visited the doctors as well as met with a nutritionist again. Audrey gained weight (woo hoo!) so they were pleased and we continued to talk about good foods for her. We have been really researching the best foods to help Audrey fight this and keep her immune system up. Now we just have to convince her to eat it!

The doctors reviewed the PET scan results with us and fortunately there weren't any new areas of concern. Thank you Lord. They again stated that the current plan will be eight cycles of chemotherapy. Four before surgery and four after. This will likely put us into mid-January. Audrey has been such a joy the last couple weeks. The fact that I have been able to be with her around the clock is something I will always be thankful for. I can't imagine having to schedule her care and appointments around a work schedule as so many people are forced to do. We are incredibly hopeful and optimistic about Audrey's treatment, but are also nervous to get through the next couple of months. This week due to Audrey's levels, we have to be on "fever watch" to make sure that she doesn't have any kind of infection. This means not a lot of visitors and no busy public places. We have been hanging out at home a lot anyways so we don't mind!

Today we went in to get labs again as Audrey's platelets are low. We aren't quite so low that we need a platelet transfusion but we go back Sunday to check again.

Next week Audrey will get her second cycle of chemotherapy medications. From what we understand these are more potent and have scarier side effects than those of the first cycle. Please pray that these medications attack the cancer cells and don't cause these awful side effects in Audrey.

Thank you for continuing to think of our family and for your support.

Well we have been home since Monday afternoon but Tuesday is the only day we actually had at home all day. Wednesday we took Audrey in for a hearing test as well as a clinic visit and labs. The hearing test was first for the day and Audrey did so well. There are a few different tests they do and they were actually able to get even more information then they expected- which is great for future comparisons. It sounds like we will repeat these tests fairly often so that if there are any changes to Audrey's hearing, they can adjust her medications accordingly. Her results were very good and we pray that none of the treatment affects that.

Next we went to clinic for labs and to meet with the oncologist. They keep a very close eye on her blood counts so that we know when she is in need of transfusion and also when we have to be even more careful of coming in contact with viruses/bacteria. They expect that her counts will be lowest about a week after chemo medications- so this weekend will be very telling for us of what we may expect in coming months. From what they drew she looks very anemic so we will be going back today (Friday) to check again and likely get a transfusion.

We met with a nutritionist again at our visit to review Audrey's diet and basically were told our threshold number for Audrey's weight. If she dips below this number we will likely have to have an NG tube (feeding tube) to keep her nourished with enough calories to support her though treatment. We are trying our best to avoid this but it is challenging when she cannot tell us if she feels nauseated and can't tell us what she feels like eating. Her diet has already been a big priority for us so it is great to have support and more guidance from her team. She has gotten sick a couple of times already but it is hard at this age to say whether it's from the meds or just ate too much/didn't agree with her.

From our time with the oncologist we found out that her cancer does have one unfavorable characteristic that means we may in fact be in for more than the 4 courses of chemotherapy. It is hard for them to say now as they don't know how she will respond to the treatment but they want to prepare us for this as a possibility. Our plan for now is for me to take leave as long as I can and once mine runs out, Galen will take his.

Yesterday we went back in to have her PET scan done. As I mentioned before, this scan is to serve as a starting point for future comparisons. Also, it should show if there is evidence of any other areas of concern that haven't previously been seen. We may not hear back on this scan until Tuesday when we see her doctors again. Unfortunately so many of their tests require Audrey to go under anesthesia because they require little to no movement. We absolutely hate that this is the case, but there aren't really any other options. So yesterday she was under for about half an hour while they ran the scan and then they brought her back to us while she was waking up. We have to keep her from eating hours before the tests and this is certainly not making it easier to keep her weight up.

Thank you again for supporting us and for following Audrey's progress. Please pray that Audrey stays strong over the weekend and that she keeps her appetite so we can keep feeding her as before. We will update again next week.

Our baby girl is 11 months today!

Yesterday after our third night of chemotherapy medications we were able to bring our punkin home! Now we basically wait at home while Audrey's immune system responds to the meds and recovers before we start the next round. So far we haven't seen much of a change in her attitude which is all we can hope for. She is so happy to be home- crawling and cruising around the house- and so happy to be in her own bed. Unfortunately Audrey's favorite activity-- bath time-- is a bit more challenging with her central line but we are making the most of it. We have to be incredibly careful going forward that Audrey isn't introduced to any new viruses as she won't have the ability to fight them off. We also have to keep her and her line extremely clean so that she doesn't develop any sort of infection. This is perhaps the scariest part of her treatment. Fortunately we don't live far from Children's for our many return visits. She will see her doctors again tomorrow to take labs and check in on how she is responding and will also have a hearing test to determine a baseline as some of the medications can affect her hearing. Thursday we will go in for hopefully our last scan for a little while. This scan will give them a good picture of her affected areas and will also be a comparison for future scans so they can monitor how the cancer is changing.

Once again we are encouraged by the fact that she is receiving treatment at such an amazing hospital. The doctors and nurses, as well as additional support staff, are absolutely incredible. They were all in love with Audrey and I know her doctors were excited, but sad to see her go. She definitely made an impact on all of those she met. One of her cardiologists came by while we were staying there just to say "hi." She was there the night Audrey was admitted to the Cardiac ICU back in October of last year and we have seen her for many of our follow up visits the past several months. She was definitely crushed to see Audrey going through this as I know she has been so encouraged to see her fight against her heart condition.

As if we didn't already appreciate Seattle Children's from our prior experience-- they have so much in place to support families and to just make the nightmare a little more liveable. We have been blown away before and this time certainly hasn't been any different.

We will continue to update after our visits this week and just ask that you pray or think of Audrey as we continue on this unfamiliar road to getting her free of cancer.

Yesterday was a big day for us. After ultrasounds, X-rays, blood draws, CT scan, biopsy surgery, bone scan and MRI we were finally able to get more specifics on the degree of Audrey's disease. We were already confident from the doctors initial impressions that she has neuroblastoma but the big questions were- where has it spread and does she have the indicators that would put her in the high risk category. (High risk requires much more aggressive chemo and surgery and is not nearly as bright of an outlook). Before Audrey got back to her room from the bone scan and MRI (she had to go under anesthesia for the third day in a row) our four doctors came in to give us some news. Audrey did not fall into the high risk category. There was no indication that it had spread to her bones or bone marrow and the mass by her spine does not currently threaten her spinal cord. This is the best scenario for Audrey. They laid out the plan for Audrey's chemotherapy and subsequent surgery which if all goes as planned will take place some time in November-December. Initially they told us she would get another 4 rounds of chemo after surgery. About 10 minutes later one of our doctors came back to say that her cancer cells divide in a way that makes them more responsive to treatment and she likely won't need the additional 4 rounds after surgery. More good news! As he was telling us, the nurses brought us back our angel who was smiling and ready to eat! We had been told we might go home yesterday but because Audrey's cancer is growing a little more quickly they had us stay and we started her medications late last night. She did beautifully and you wouldn't even know anything was different. We are prepared for some pretty scary side effects but are glad we could get started smoothly.

Because of Audrey's history of cardiomyopathy, our cardiologist team will be working closely with our new oncologist team to make sure her heart stays strong. (Some of the chemo medications are very rough on the heart). Right now her heart looks perfect but she will remain on her heart medication as a preventive measure.

We are in awe of the strength of our baby girl. She has not shown any changes to her mood (smiling, silly and sassy!) really at all. After her surgery our baby was groggy but never seemed uncomfortable or in pain. We know we have a fighter on our hands and we thank God he gave us such a sweet strong girl.

The current plan is to be home Monday or Tuesday after we have finished our first round. Thank you so so so much for the thoughts, the prayers, and for supporting our fight to get our Audrey healthy again. We are very encouraged by all the love for Audrey. We know we are the luckiest parents to have been given such a gift.